Jump to content
Frequently Asked Questions About Celiac Disease Read more... ×
  • Sign Up
1 1
DiSagredoM

Newly diagnosed

Rate this topic

Recommended Posts

I'm sure there have been many posts like this... but I'm newly diagnosed via lab work and an endoscopy. (Biopsy results are pending). According to my GI Dr (who was a referral from my primary and who I don't know at all) the Celiac Disease is "pretty severe". That's it.

in the recovery room he says "pretty severe" and to see him in a month.  And to "go ahead and start the gluten-free diet".  That's it?? The dietician they referred me to is in a Diabetes Clinic. 

And now I'm absolutely terrified. I'm a single mom, 47, my kids are just starting out as young adults and teens... and I'm absolutely scared to death. I never even knew I was "sick"...

Any words of encouragement would be appreciated. Any tips or suggestions as to what to ask my doctors as well.  I'm starting to search for a support group as well.

Thank you in advance....   

Share this post


Link to post
Share on other sites

Welcome!  You found a great support group here. 

Yep, just the gluten free diet.   Try reading out Newbie 101 thread located under the "Coping" section of the forum.   The University of Chicago has a well-written website.  They answer lots of medical-related questions.  For example, follow-up care:

http://www.cureceliacdisease.org/faq/how-often-should-follow-up-testing-occur/

You will be fine!  More later, I have a teen to get to school.  

 

  • Like 1

Share this post


Link to post
Share on other sites

I wasn't sick either and was diagnosed at 42.  I have 2 kids.  It is overwhelming at the beginning but it is doable.  

Every family is different so you have to find a system that works for you.

Start with yourself and focus on eating whole foods at the beginning.  Don't go out and buy a ton of gluten free crackers, cookies cakes etc. Eat meats, veggies and fruits.  I love dairy so I ate gluten-free ice cream to get my sweet "fix" and yogurt.

 Avoid eating out in restaurants at the beginning. That is the most challenging part (along with traveling) so just abstain at the beginning because there is a high chance of cross contamination there (unless you have a gluten free restaurant nearby). You'll eventually find a couple of restaurants that you vet and can feel safe eating at.

Buy a new toaster, colander that will remain gluten free.  Clean your pots and pans really well. Cook only gluten free food in them (or if your kids cook, buy separate pots for the gluten free food)

What I did was make our dinners all gluten free for the most part.  

For breakfast and lunch, we usually don't sit down to a formal prepared meal - we might all do something different, so I do my own thing.

Some people choose to have a "shared" kitchen and some people make their entire house gluten free.  I chose to have a shared kitchen since no one else in my house has celiac. 

We have a certain cabinet that has all the gluten containing foods - bread, cereal, granola, English muffins etc.  There is a nearby counter that we use for preparing those foods. We don't really cook any gluten containing foods except in the toaster or in closed containers in the microwave.  Label your foods in the fridge that you don't want the kids to use with a special sticker (i.e. jelly, butter, etc)

After every meal, I wipe down the kitchen table and countertops with paper towels to remove any leftover crumbs.

Having  a shared kitchen is very difficult and nerve wracking at times. It is tough to avoid cross contamination without rules and careful attention.  Your teens may not be up for the task. You'll have to gauge that on your own. 

They get plenty of gluten out of the house and you can always take them out to a restaurant to get a burger, sandwich with real bread, or pizza. 

Every Saturday is Pancake day in our house and we always make them gluten free.  

Good luck! We are here to help!

Share this post


Link to post
Share on other sites

Welcome- this site and it's members are a wealth of information. I visited the site years before diagnosis, then  I actually joined while perusing diagnosis , then it was confirmed this is where I belong. 

You can and will spend hours on here all the links the previous poster gave is a great start. I initially was living in a shared home but due to my increased sensitivities we are now gluten-free home . I get many symptoms in addition to gi my brain and nerves are very sensitive to cc. My journey also revealed my son has my issues so half of us are gluten-free so we made the switch to a gluten-free house.

While I've been quite cranky this past year still healing, I  am so utterly grateful to my husband and daughter to have made the gluten-free switch , but they truly saw that I needed it. They knew I had problems during my gluten challenge before it was dictated your now gluten-free for life.

It is possible you had no symptoms and are silent, but as you read more you may have many deja vu like experiences reading these postings. I spent decades with different bundles of symptoms being diagnosed  as other  illness ( I had many of  the top 10 misdiagnosis labels  for celiac/ncgs) before they all came together in a giant umbrella package in my 4th decade as one.

Best Wishes on your healing path

  • Like 1

Share this post


Link to post
Share on other sites

I'm very recently diagnosed as well and I didn't think I had some of the symptoms I had until I went off gluten and they disappeared. You might be surprised at how different you feel because you were living with symptoms that you believed were "just part of life." 

Im completely off gluten, but am still struggling with cross contamination. It's a long process, and it's sometimes hard for friends and family to understand. I now know within minutes if I've been glutened (it happened today with the waffle iron) because my body reacts in ways that it has my whole life- asthma, low back pain, fatigue. I didn't realize that those things were "not normal" until I went completely off gluten. 

Long story short, you're going to be fine!! You'll learn your gluten "tells" and be able to listen to your body. It's scary, but manageable. And you'll probably feel so great in a few weeks you'll never even think about going back :)

  • Like 1

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
1 1

×